Living With JHD


Karli

Juvenile Huntington’s Disease is a Neurological degenerative terminal brain disease, meaning it’s a disease that affects the brain and over time keeps getting worse and worse until they pass away (defeated the jhd) is how i like to see it for them , and all kids are different on how they show their symptoms, no child the same.

…JHD refers to Huntington’s disease has an age of symptom onset from Infancy to 20 years old. JHD  takes away all of a kid’s abilities over time, so for a kid it makes it hard for them to do simple things like go outside to play with their friends on the playground or even blow out their birthday candles. There are many milestones that these kids might never experience. It slowly takes away abilities and worsens and worsens until they can’t do anything, and then they sadly pass away from it within 10 years.
There is NO CURE.
Please help us find one.

Kids who develop symptoms at a young age have a variety of differences in how the disease progresses. than of that of an adults. Jhd progresses more aggressively and their lifetime is anywhere between 3 to 10 years once diagnosis has been made , this does not always hold truth for all cases.

Symptoms may come and go and the age of development and presentation of symptoms, combined with the lack of professional experience with these kids might be factors in untimely or miss diagnosis and lack of understanding the kid’s full needs.  This can cause too many difficulties for family and professionals caring for these kids.

Only an estimated ten percent of people at risk for Huntington’s Disease develop the juvenile form, but it’s hard to get accurate numbers.  There’s so many more then that!! The younger the onset, the faster the progression. Which makes it harder for family, friends and even doctors to cope with.

  • A huge question might be, when should we be concerned that my kid might have JHD? Due to the variability and the truth that kids  are developing and growing, and many other factors, the best answer would likely be “when there is an obvious change”, particularly one that is impacting the kid’s quality of life. There is approximately a 40% chance that someone who develops JHD will develop epilepsy. Some ways to tell if someone may have JHD are if they have a decline in school, behavior issues, personality changes ,impulsiveness, memory loss, difficulty with comprehension, balance  or movement difficulties. The list could be quite long.

  • A significant question might be when should we test the kid? This has been a confusing question. The response will vary dependent upon who you speak with. NO one wants to give a kid a terminal diagnosis. A diagnosis is a quite serious step, keep in mind, diagnosed or undiagnosed if someone is symptomatic their genetics will not change. Taking the time to be sure everyone in the immediate family is as prepared as they can be is likely invaluable, while weighing the kid’s care and needs for treatment in this process also. An experienced genetics and or pediatric neurology team is important in assisting the family along with involving a social worker with the HDSA.

It’s always important to not place expectations on a kid with JHD, adapting their world to them, vs. adapting them to the world.  Keeping in mind that all changes are not necessarily permanent, a kid may be unable to walk one day and then the following day walk again as if there had never been an issue. On the other hand it might become a chronic thing then is most likely the jhd. MOST IMPORTANTLY to keep in mind that just because the kid is terminally ill with a degenerative condition DOES NOT mean there is no HOPE or that nothing can help. Diagnosis is a new beginning NOT an end.

Loss of motor control will make test taking slow and confusing..

Kids with JHD are quite special young people with invaluable lessons to teach anyone who’s life has been touched by these kids.

 

  • They say Juvenile Huntington’s Disease, used to be called parkansonianism, is extremely rare, than why are so many people showing up? You might think we found most of the kids with jhd, but the truth is this is only a small portion of them.
  • Just because it say’s jhd and hd on it, doesn’t mean it helps the kids too. You have to be careful.
  • Huntington’s Disease and Juvenile Huntington’s Disease behave differently.
  • Tests like swallow studies, ekgs often, most the time, come back normal, even when it’s not normal, they just can’t catch it. They have to catch it during an event of it.
  • Many people just call them spoiled or lazy or bad kids.
  • Kids don’t want to go do things, they’re just making excuses, myth!! They know what their body can handle and can’t
  • Their brains don’t lose neurons, they get damaged and scarred.
  • The immune system is in overdrive. It never turns off.
  • jhd causes your teeth to go bad even if you take care of them all the time, something the dentists don’t believe but it is true.
  • This is a ridiculous fact but true, jhd causes earwax build up way more than normal.
  • Your nails grow faster.
  • jhd makes your hair fall out, you won’t lose all of your hair with it, but your hair will thin and you might even need to get hair extensions if you want to make it longer again.
  • It may seem normal at times, but it can cause you to hop at random moments. Not even parents believe me there. I believe it though.
  • The doctors scale will probably tell you that your weight is normal every time  even if it’s fluctuating all the time
  • It can make your heart stop and you can fall and turn blue, and than get right back up, it makes your heart go fast, slow, anyway it wants it to really. It can become irregular.
  • If it’s there, it exists, at one point you stop reasoning why and start saying it’s just there, your stomach hurts your throat feels funny, it’s just there.
  • Being itchy is neurological pain just in the form of being itchy.
  • Often run low grade fevers.
  • Eye sight and depth perception affected gets worse.
  • Symptoms can come and go.
  • They can get sicker than better than a lot sicker, etc.
  • They get sleep disorders, they can stay up for days.
  • They have it present stronger on one side of their body.
  • The feeling/ textures of clothing, sheets, socks, jackets, everything could bother them, it’s easier to let them pick it out and feel it themselves.
  • They say a small percentage gets seizures, but they’re finding it’s closer to half or more.
  • They stay particular on one type of food, one type of flavor for a long time.
  • Too much stimulation upsets them.
  • Nothing is sudo. You can’t catch it by watching someone else have it.
  • Each child’s different even in siblings.
  • The kids don’t like change.
  • They are not the disease, be mad at the disease not them.
  • Extreme nervousness, that may often cause stomach aches even for simple things like doctors appointments.
  • Random dystonia in any part of you, it can feel like severe cramps in your legs or toes etc. It can attack your whole body. Even all at once.
  • The scales for adult huntington’s disease stages don’t work for jhd kids 
  • Chronic hemroids can be common in jhd.
  • Menstrals can be a billion times worse in jhd because they develop cysts.
  • Regular pain medications and sleep medications don’t work they often have the opposite effect and keep the child awake instead.
  • You can feel like you have to go to the bathroom all the time even if you don’t have to.
  • It can burn a lot of the time when they go to the bathroom even without a uti.
  • Your ankles can turn in when you walk, your feet can turn out or sideways, or you can toe grab, it’s grabbing the floor with your toes when you’re walking.
  • They can tell you that you don’t get side effects when coming off a medication, they’re way wrong, especially don’t remove it right off.
  • Sicknesses are often piled on eachother, uti with flu, or cold and infection etc
  • Dystonia can move parts of your body around.
  • It can cause blood sugar issues where you all of a sudden get extremely shaky and need peanut butter chocolate and real food.
  • Therapies can often do more harm then help, watch what they’re doing when they’re with them. Voice your opinion if you think something’s not right

Here’s a few things that have helped us with this disease:

Non choke food taster

http://www.ecrater.com/p/11064787/munchkin-2pk-baby-fresh-food

Heating blankets Helps Their Aches And Helps Them Sleep
Air Conditioners
Sensory Items (Fidgets), They are often squishy balls that feel different helps with sensory and strengthens hands, rocks springy things noisy things soft things, anything they find and feel even as simple as a rock. In sensory needed though you need to have a big sensory ball, the fuzzy/stringy play balls.
Bed Surround So They Don’t Bang Against Bed Rails Or Fall Out Of Bed

http://www.geniecare.com/safesides/

Use those wraps that have the corn in them to heat up and keep for them, always always have them available.

Walker Sometimes Full Body Sometimes Smaller

Balls From Ball Pits Often Calm Them
Body Sox Calm Them and Help With Restless Leg Syndrome
Pressurized Vests Or Weighted Item Calm Them
Stroller/ Wheelchair
Bath Chair/ Potty Chair
Cups That Monitor The Amounts That Come Out Of It (Water Bottles work too and Toddler Cups)
Special Socks For When They Rub Against Things
DVD Players or Music Players for when they get upset or overwhelmed, they now have ‘kid tough’ dvd players, music players with big buttons and that don’t break easily
Televisions yup those help alot
There’s alot of games out there that help with speaking, memory, etc like guess who
Rocking Chair helps with the calming and movements
Straws very helpful when it comes to drinking but sometimes doesn’t work due to the work it takes to suck the liquid up the straws
Ispy books
Pads of all sorts for the falls, knee pads, elbow pads, pads for under tables, around beds, pretty much anywhere that you think should be padded
Balancing Boards
Wii Fit helps improve balance, movement, hand eye coordination, and it’s just plain out fun
Excersize Balls
If they can’t drive and want to get around try a scooter, go kart
Hand Braces
Foot Braces
Therapy Putty helps strengthen hands and counts as a fidget
Flat Shoes that supports whole foot and can even find some called high tops that support the ankle too, we use bendable for the toe slipper/shoes now called muk luks
There’s page turners where you press a button and they can turn the page that way
Dynavox/ speaking device
Noise Reduction Headphones for when they listen to music or watch dvd or anything to reduce stimulation and they don’t fall off as easy with movement disorder
Non- spill cups they don’t spill over when dropped
Diaper Genie keeps the house smelling good and holds messes easily
Milkshakes/ puddings/ jellos/ wafers help when they get low on calories and have a hard time with intake
Shower Head With Detachable Sprayer
Ceiling things like star shadow or anything to decorate the ceiling when they get advanced
Ice Pack Rolls/ Gel Ice Packs
Tag-less ,seamles clothing
incline board
carnation instant breakfast, or scandi shake suplement juice boxes/by boost,ensure,water bottle at school
padded seatting in school
spirometer
alternating preasure mattress
nuk/oral exercises
memory foam pads
5 point harness booster seat on chair
special needs carseat
versaform cushion
breastfeeding pillow for positioning,pillows of all sizes
cotton beeding,bathblankets
bandanas for clothing protection and bibs with the bottom catchers
sheepskin covers
pulse ox with ekg reading and recording ability and core oxegyn sensor
B.Preasure cup
stethascope
thermometer
baby moniotors
programmable large button phone NOT cordless BUT has a picture for each programmed number…had for karl and worked so well he used it until his last few months of life.. I did cover the 911 button because the only downfall was if he couldnt reach me or the others on phone didnt want him calling 911 .. 

Click Here For Example

wheelchair ramp
fingertip crayons and paintbrushes
sand tray
moonsand
magnetic games
puzzles
large button remote
daily medication organizers
heated mattress pad

heated blankets

picture words

memory games

I use a camcorder (flash) to document my symptoms and tape recorder to record memories or anything i want them to remember or things i want to remember. Karli used disposable cameras.
cooling mat they have large rolls that look like ice cubes probably in more of the sporting goods

http://www.amazon.com/Rubbermaid-Blue-Ice-Flexible-Blanket/dp/B004286IL6/ref=sr_1_5?ie=UTF8&qid=1358485097&sr=8-5&keywords=freezer+gel+mats

punching bag,for agression
balloons,balls of all sizes shapes textures

anything that their senses like a rock a pen and eraser

button and seashell collection
beadding sets
lots of HUMOR
hammock swing/ airwalk swing/ platform swing
Food Grinder

always bring your own stuff to the hospital too blanket pillow their meds you don’t know what meds they have in supply for them that they take, keep an emergency bag packed, and you can get a small pill carrier with the chopper to cut them in half inside a small carry in purse the size of your hand.

Magic Bullet to blend, milkshakes, food, anything really

http://www.buythebullet.com/

Use calenders to organize nurses, doctors, anything you need to remember it helps alot trust me, you can even use them to write down events that happened that day to help with memory
Make lists of things to remember for doctors or new symptoms, what date they happened, and things that helped them, or if they do chores keep a list of what chores
Post up little reminders when they need them about closing doors, how to wash dishes, how to shower, how to get dressed etc always get copies of medical tests and consults for helping to coordinate medical care

What i’ve found to help anxiety wise is progressive muscle relaxationhttp://www.anxietybc.com/resources/pdfs/MuscleRelaxation.pdf and calm breathinghttp://www.anxietybc.com/resources/pdfs/CalmBreathing.pdf if they get angry it usually helps to have them walk away and calm down

wreck this journal this is not a book  those kerri smith books help you can destroy them it tells you too and there’s the book of me a do it yourself memoir past present future you can fill out how you want your service the songs your life 

memory gets hard, photos maybe even write a memory by it videos stories scrapbook

recording what you were able to do once on camcorder etc

battery operated portable doorbell system you can add on buttons to it

behavioral modification therapy
art therapy
massage therapy
water therapy
music therapy
Tichi
Yoga is good for hd
Physical Therapy
Occupational Therapy
Speech Therapy
clapping therapy/pulminary therapy

keeping videos on hand with you of whats going on for the doctors and it seems they like to ask you questions over and over, meds, diagnosis, primary doctor, keep it written down with you so you don’t have to repeat it

Please email me so we can keep the list and information growing on here! jacecat_99@hotmail.com

wristbands also help her from banging her wrist into edges of tables or doorways, her wrist protrude a bit from the dystonia, and not much fatty tissue there to protect her wrist. In fact very thin.

And the dr. soles inserts helped in her foot pain

It looks like they put long socks on Sonia’s hands to help her

Thick it works really great for swallowing food and beverage!

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A gallon sized zip lock bag. Hair gel. Then I bought little rubber toys like bugs, rubber band bracelets…. Also sparkly confetti. I even found confetti that say”Elijah”. You could put anything in it. Like marbles… Etc. Then I used duct tape to seal it. I went all around the edges with the duct tape.

-Daniella

To Strengthen Hands, Just put the play dough in and tie the balloons, decorate them with sharpie, pom poms, googlie eyes

photo-100

More From: Stanford Hopes

Here’s Another Great Article About Brain In JHD Showing Widespread VS The Adult HD Brain How Symptoms Are Different: Health Innovations
virginia-57

Virginia changes so much already due to jhd, that even she knows. She has watched videos of herself from several years ago, and cries!! She cries cause she sees how different she is and what this dang disease has stole from her in looks, and even character !! Now she has to go through this, yet another challenge , it’s not fair!!!  I’m mad as heck, not only is gin going through this, she has sisters and a brother who watch everyday !!

aidan (110)Almost every night I hear from Aidan “I wish I didn’t have JHD” when he is itchy, restless, & can’t get comfortable. Or when he falls. Tonight he looked at Sis, while they were eating dinner, and asked “Sis, do you wish I didn’t have JHD?” Of course her answer was “Of course, buddy, I wish you didn’t.” Then he asked about everyone in the family, name-by-name. I let him know that there was an “army” of family and friends that wish he didn’t have JHD. Wow, I hate this f-ing disease…. Aidan: “I hate JHD. When is it going away?” (with tears coming down his face) Me: speechless, hugged him, wiped his tears and said “When we find the right medicine…” I wish I knew when that would be.

“I hate JHD.”
“I’m tired of falling.”
“I wish I wasn’t itchy.”
“I wish JHD would go away.”

breanna-64Breanna L‘s Florida Make-A-Wish. We arrived late the first day and couldn’t go to any parks. That night we had to go to the er. She has neuropathy which is causing her to itch all over her body uncontrollably. She was gauging her skin out. This had been going on for months but the drs wouldn’t listen to me. It took an er in Florida to help my 10 year old. Er transferred her to a children’s hospital further away from our villa. She was admitted for the night. It sucked! She cried and cried because she wanted to leave and go to a park. She really struggled but had fun in the end.
I cried when it became 2017 because about 30 minutes before that Breanna L said, “mommy Why can’t I stop drooling on my plate while eating this pizza?” I had to tell her that it’s due to jhd and her tongue muscles are getting weaker. Things keep moving too fast. So, when 2017 hit i just thought to myself how many more things are going to change in her this yer and they will not be for the better.

wyatt (4)When we took Wyatt for his evaluation while waiting in the ER to be admitted he asked ” do they have a cure yet”…he’s also said he was itchy and cant sleep.

kate-2As I know our time is short with Kate.
She is braver then brave… And since we have been,fighting all of this she has cried… And said she is scared. That is the 1ST TIME SHE HAS EVER SAID SHE WAS SCARED.
And that breaks me,even more.

emily” DON’T WORRY ABOUT ME & DON’T CRY FOR ME ” ” I’M OK MOM ” AMAZING ANGEL SHE LOVED THAT GIVING HER “STEM CELLS” WAS HELPING TO FIND THE CURE ! Emily‘s  STEM CELLS ARE STILL WORKING FOR A CURE 5 YEARS

Karli's Dear God Letter

Karli said I wish that could play outside on the slide and swings with my friends without falling. I with that my dotors could help Daddy to not be so angry or Jacey or anyone I don’t like HD it’s no fun cuz I can’t play like my friends at recess. I want to go to the party to celebrate the cure for HD and dance. It will be lots of fun!

Jacey

‘jhd sucks and it hurts and it surprises you with different things that are cruel all the time and i really hope you help the kids on here for that sake!! Sometimes i’m so scared to die and others I hurt so bad I want to. –Jacey-’

From a parent who lost a child (children)

Olivia

Jennifer (Olivia 12)- I think JHD is the most cruel, ugliest form of HD, really any disease. Any person with this form is immediately one of my heros. A person with JHD is always positive regardless of what the are going through.

KochanYumi (Kochan 16)- I hate HD, but HD gene is one of the cells of my son. So he would not be born if he had lacked HD cell. I can’t imagine life without him. All I want is him. Therefore I need him and love him with JHD so much.

lucas and chris with their mom lindaKaren (Lucas 21 and Linda 36 passed away and Chris 18 is still alive)  JHD Is the most awful Disease out there It is So Heartbreaking And takes our Children from us, Many times even before they pass ..Children with this terrible Disease Are the Bravest Kids I’ve ever seen ..They Are my Heros ..With the Biggest Hearts and the Best Smiles ..We Will always Be Praying the Cure is Near ..For Our Kids

cory (30)Stacey (Cory 21)-  well…..it’s sad that since the discovery of the gene, that our countries high divorce rate, that blood tests that used to be required for marriage checked for venereal disease and not genetic disease it’s also sad that these kids have to miss out on so many things-driving a car, dating, friendships BUT, I do believe they (JHDers) are angels here on earth, and each have a purpose to fulfill in their short lives

meaghan (68)Kinser (Meaghan 15) Meaghan was diagnosed with JHD at the age of 10. She lived a fairly normal life until age 14. We got her a service dog when she was 12. Dixie was her best friend. The best thing we could’ve ever done for Meg. Right before she turned 15, she fell down our stairs and that is when all of her neurological problems went into full gear. By the summer of 2015, she was struggling terribly. She couldn’t walk without holding onto things. She was itchy a lot of the time, didn’t sleep, choked occasionally and was starting to have problems keeping weight on. In July, I admitted her to the hospital because she had skin ulcers, uncontrollable itching and was not sleeping more than 1-2 hours at a time at night. It was the worst thing. She ended up in the hospital from the end of July until she passed in November, due to going into cardiac arrest. Totally unexpected. The whole 4 months was a nightmare of fighting, politics and doctors not knowing how to help my poor baby. The direct care she received from the nurses was phenomenal. Other than that, I could’ve killed everyone. This disease is a horrible, terrible, cruel way to live, for anyone, but, especially for our children.

From a parent with a jhd child (children)

bryan (43)Patty (Bryan)- I am a wife and mother of two children. Bryan is my son and Angela is my daughter. My husband and I met in high school in 1985. We married in 1986 and I followed him as he pursued his Navy Career. In 2001 my husband was diagnosed with Huntington’s Disease. He retired and was medically boarded out of the Navy in 2003, we then moved back to our home state of NM. Because of the progression, Ed was placed into a nursing home in 2008. In 2009 my son was arrested, after being released from jail, he moved back in with me. I could sense something was terribly wrong, in fact I had those feelings since his early teens. We went to see his primary care physician and he referred him to the Neurology clinic at The University of New Mexico Hospital. After meeting with many doctors, Bryan was given the genetic test for Huntington’s Disease. A couple weeks later, we were called back for the results, POSITIVE for Juvenile HD was what we heard. I somewhat felt at ease, I think because deep down in my heart I already knew what the answer was going to be. 5-7 years is what I was told, how does any mother absorb that sort of news? I knew at that time that I had the responsibility of caring for my son for as long as I could. Watching him progress the past 4 years has been the toughest, seeing the daily changes with his body and mind have been very difficult. Yes, it’s hard when it’s your spouse but when it’s your child there’s just something different about that. the past few month’s have been hard on him, his gait and speech have declined substantially. This past March my daughter was tested as well and thank the good Lord her test was negative. Disease is never fair, even less fair to me when it’s a child. What do I think of JHD, I think it’s an ugly monster. We have to remain hopeful that some day there will be a cure.

cailey (28)Jessica (Cailey)- I think it’s horrible I think the disease is the most horrible thing I’ve ever witnessed.

Karli Jacey and Erica

Jane (Karli 13 passed away, Jacey, Erica) I wish that everyone fighting this disease finds love understanding and care that they need for the most quality filled life and quality of care. I wish that our community of support continues to grow. I hope that JHD will gain even more attention to help support our doctors continue to make great strides in research and care alike. I wish for JHD to continue to gain the recognition it has as it offers up hope to our families and we need the time and help. I’d love nothing more than to grow old while watching my children grow with my husband by my side. However, if this isn’t possible I wish that people embrace our families rather than fear this disease. I wish for all the families I’ve gotten to know and those I have yet to meet, strength, peace, love, and a year to celebrate. I wish everybody a year of compassion and answers to their needs . Also that no more families have to say goodbye to a child, parent, brother, or a sister… AND I WISH US ALL TO MEET FOR THE CELEBRATION OF A LIFETIME… THE CURE!

Siblings Of A Loved One With jhd

katelyn (102)There was a night after Kate was diagnosed that her “little” brother Mikey came to me with tears running and his voice was tiny as he asked…
Mom why… She and me,were supposed to sit and watch our grandchildren play ..we were supposed to put you and dad in a nursing home that wouldn’t change your diapers (it was a long running joke) … Mom she is suppose to be with me…She is my big sister… Why mom why does she have to have JHD. Why??
I need her …
I had no answers for him then… And I still have no answers for him or her 3 other little brothers…
Landon who was so brave and strong for her… Who was so sure he would find a cure/treatment… And now stuggles with his fears and anger with losing her, he asks for his family back.. The family we had when Kate was 18 when he stayed the night with her And they would laugh and watch movies.
Shawn who even with his stuggles he is the frist one to,always help her, he understands her slured speak and never tell her no, he makes her drinks or helps her to eat…
And,Gabe who tries to help her eat..
I don’t have answers for them… But we tell them that we are togather and we love each other. That we are stronger as family then we are alone.
This song reminded me of these moments.. The moments that “The Boys” and Kate will not experience..
I know Mikey will tell his children about his big sister and who she was, the laughter and trouble they got into.
I know Landon will hold,in his heart the times he spent with his “Sissy” at the apartment before she,had to move back home. He will find peace in sharing and laughing about those times
I know Shawn will become stronger and braver, and more compassionate Becasue of his actions with his sister.
Gabe will find self-confidence to grow and develop Becasue he can help an adult.
For me I find that my heart breaks when I think of the Boys .. They all have different relationships with thier one And only sister. They are braver then me…

More..

Dave- What I think of it isn’t fit to print

Wendi- Beyond Horrible and Unfair

Lauren (hd +)- I think it’s the worst disease I’ve ever seen, much worse than the adult onset. And yet, such severe symptoms don’t break these young adults. They show such strength through such a horrific disease.

Jonathan (son at risk)- If you want a cold response…. It is the gateway to cure all neurological diseases. That is because 60% of children have an earlier onset that expected by CAG repeat meaning that they can be studied to identifying the pathways that enable HD to be so destructive. Every rare neurological disease that is getting a gene therapy “forever fix” is because of the parents who love their kids. HD goes nowhere in comparison. So in short, the deep suffering of our JHD kids and families is absolutely horrible, but the potential to show the way to cure all neurological diseases should be the driving force behind the research and the knowledge they bring out should be immediately applied to helping the children first. THe game of ineffective research will only stop when JHD kids are taken seriously. Their cry of suffering is the deepest need and is being heard at the highest levels of Heaven. God will open the doors and make this a better world because of the suffering of our JHD children. They all deserve the greatest love and appreciation from everyone involved with neurological diseases from Huntington’s to Parkinson’s to Alzheimers.

Comforting Stories

Shocking Stories

Welcome To jhdkids.com Where You Can Read These Kids Stories And Learn More About JHD And How Different It Is In Kids Than Adults
https://www.youtube.com/curejhd
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